Tags: Creaky Joints, EULAR, NRAS, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Last year I attended the Future of Health 2014 Conference, having applied to be a ‘citizen journalist’ and tweet about the event. There was a big focus there on listening to the patient, and that’s certainly not an isolated event. The excellent Creaky Joints report on the EULAR conference makes it clear that this is a much bigger thing. The thing that especially caught my eye was that FINALLY we’re being listened to regarding fatigue. Fatigue is not correlated to disease activity, a study by the UK’s National Rheumatoid Arthritis Society, which I participated in by answering a survey, found; in other words, I can have mild, controlled RA and still be bloomin’ … erm … exhausted the whole time! There’s a good chance that if you’re reading this blog you’re an RA sufferer, and if you are there’s a very good chance you already knew this, but I’m quite sure most of the medical profession did not – and does not, and it is through listening to patients (or patient-led societies) that they are finding out.
Combine this European-wide event with all the patient activity at the American College of Rheumatology event last year, and the fact that even in my little provincial hospital the consultant was genuinely wanting my opinion on things last time I saw him, and I really do feel there’s something positive going on.
I know it won’t be perfect, I know there are still plenty of medics out there who don’t understand RA at all, and even the specialists will often think what’s on their charts is more important than how we feel, but it certainly seems to be a move in the right direction.
The NRAS survey highlighted in the Creaky Joints report indicated that 66% of patients surveyed (in the UK) were never asked about their fatigue and 79% said it had never been measured. At the moment though, there is no generally accepted measurement of fatigue, so any fatigue studies are a bit hard to take seriously. The next stage should probably be to agree a way of measuring fatigue so that studies can be sensibly compared and conclusions reached.
And now NRAS has another survey – this one is all about how much input or influence RA patients have in their treatment decisions, so if you’re based in the UK and have been diagnosed in the last ten years, go ahead and fill it in; your views could form part of the next EULAR conference; who knows!
Tags: aches, Amoxicillin, doctor, methotrexate, MTX, NHS, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
Well, the last few weeks have certainly been interesting … in the Chinese curse kind of a way, although there have been some great highlights including a couple of painting classes and a textile workshop. Mainly though, things have been rather dominated by toothache … and irritation!
I had a niggley toothache, not bad, just on and off, but with a lot of sensitivity to hot and cold as well, so eventually I bit the bullet (ouch) and went to the dentist – who ummed and erred a bit and said that hopefully it just needed a bit of filing down, but if it didn’t it ‘could be nasty’. Not the words you want to hear from a dentist really. He said if the filing down didn’t work, to come back the next day … it didn’t; I did.
Now bear in mind we’re extremely busy at work at the moment and the dentist is in a village up the road and it takes around 20 mins to get there from work. So a visit takes at least an hour all told – and I had to do two in two days – frustrating! On the second visit he did the briefest of examinations and said, ‘Reckon it’s an abscess – have some antibiotics’ … so I did … but I was cursing because I thought, ‘Why didn’t he just give them to me yesterday, and save me an hour?!’
I got back to work, opened the packet of Amoxicillin, glanced at the leaflet inside and it said, ‘If you’re taking any of these medications, talk to your doctor first’ and one of them was methotrexate!
Muttering under my breath I picked up the phone and phoned the dentist – and had to waste more time trying, and failing, to explain what the problem was to the receptionist. Understandably the dentist wasn’t available immediately – no doubt he had his hands in someone’s mouth – so I waited for him to call back … and waited … and waited …
I knew there was absolutely no chance of getting hold of a doctor that day and, as the tooth was getting worse, I didn’t want to wait until the next day and then I had a brainwave … or perhaps a brain storm (in the old-fashioned sense!) I thought, ‘Hang on – isn’t that 111 number supposed to be the NHS non-emergency number – they can answer queries, I’ll ask them.’ I took a brief look at the website and it said ‘111 is the NHS non-emergency number. It’s fast, easy and free.’ Sounds good, I thought, so I rang it. It was answered very quickly and as I was talking to the pleasant lady who answered I noticed on the same page as ‘non-emergency number’ it said, ‘You should use the NHS 111 service if you urgently need medical help or advice but it’s not a life-threatening situation.’ I felt a bit embarrassed because clearly it wasn’t that urgent, and even more embarrassed when I explained the issue and she said, ‘What symptoms are you having?’ And I said, ‘None – I haven’t even started taking it yet!’ She was lovely though and put me through to ‘a clinician’.
Now I’d done a bit of a checking up on the internet first and the issue is that Amoxicillin can cause the methotrexate not to be properly excreted from the body, resulting in a potential build-up of toxins from the methotrexate. I could find no indication of a) how much MTX you’d need to be on to have a problem b) how much Amoxicillin you might need to have a problem or long you’d have to be on it for or c) How long the effects might last, since I’d had Amoxicillin only about 3 weeks ago for the sinus infection that was part of the reason we failed to get to Barcelona!
The clinician came on the phone. He clearly had not the foggiest idea why it would matter that I was taking MTX and Amoxicillin, so I briefly explained as above. ‘Well,’ he said, ‘you seem to know the answer then.’ Helpful … not! So I pointed out that no, I didn’t know the answer, since the question was having been prescribed it, should I or shouldn’t I take it? What was the level of risk? And so on …
‘Oh … er … um … well’ he said … and so on for a while … ‘I think I wouldn’t risk it really. You need to talk to your dentist.’ I explained I was trying to do that and would continue to do so! I felt very strongly that he really didn’t have the foggiest notion and was just covering his back, as if he had said, ‘Oh I think it’s fine’ and then I died of toxic MTX build-up, that could have been his career down the tubes … and I suspect it was a career that had barely got off the ground so far anyway.
So I called the dentist back – receptionist again – and to look like I wasn’t nagging I said I had a bit more information that I’d previously forgotten to mention (which was true) and explained that I’d also had Amoxicillin in April and wasn’t sure if it stayed in the system. Given that Mr Dentist phoned me back almost immediately this time, I can’t help wondering if she’d completely forgotten to pass on the message the previous time.
‘Oh,’ said Mr Dentist, ‘I’ve got some different information from you … as I understand it, the Amoxicillin can cause a build-up of methotrexate in the system.’ I said yes, that was the information I had too and he said that that wasn’t the message he’d been given from the receptionist. I bit my tongue, swallowed down the sarcy comment on the tip of it and said sweetly, ‘Oh dear – I obviously didn’t explain it very well then,’ which in fairness was probably true!
‘Well,’ he said, ‘You’re a sensible sort of girl. I’m sure you can monitor things and if there’s any problem, see your GP.’ I pointed out that I had no idea what sort of problems this toxicity build-up might cause. ‘Hmm, neither have I,’ said he, ‘you’d have to ask a doctor!’
So – I’ve now lost count of how much time I’ve wasted and really I don’t feel any nearer to knowing if I should be taking the damn stuff or not – but he had looked it up on the drug interactions database and said it didn’t appear to be a major problem, so I started to take it anyway.
The next day I decided that perhaps I should ask the doctor – after all, it’s only a phone-call. With the new surgery system you have to have a phone call first from the doctor and then they see you if they feel they need to, and I was sure they wouldn’t need to for a simple question.
Unfortunately I forgot to call until about 10 am so most of the appointments had gone. I explained the situation to the receptionist and said was there any chance of a call back and she said she’d have to ask someone. Now he was either new or a locum, not sure which, and for reasons best known to himself he decided he’d see me! Aaaaaaaaaaaaaargh, more time wasted!
So I went for my appointment and the first thing the pompous little man said was, ‘I don’t really believe in prescribing antibiotics anyway, but as you’ve been prescribed them … I mean normally the body can manage to heal itself without them. Of course there are some circumstances where one might have to, but it’s quite rare …’
I replied, ‘On the one hand, tooth abscess, notoriously difficult to get rid of; on the other hand, immunosuppressed; don’t you think this might be one of those rare situations?’
He looked quite shocked to have his little lecture so rudely interrupted and, pomposity temporarily punctured, he replied, ‘Oh …er … well … probably in this instance, yes.’
So … back to square one – do I or don’t I take the dratted antibiotics? And the answer was … YES! Take them. I have to say though that even the doctor didn’t seem absolutely 100% sure! He did check the database again and he did say, ‘It’s not even a red warning’ and I had seen on the internet that the evidence for this toxic build-up was quite slight and I, I think, not in humans, so I was somewhat reassured in the end.
I’m glad to say that the tooth does seem to be clearing up, and I’ve not yet keeled over from any toxic build-up!
Hubby did point out afterwards that I could have probably saved a lot of time and effort by asking the pharmacist – wish I’d thought of that! Must try and remember for next time. Another sensible option might have been to ring the hospital rheumatology helpline – but I haven’t used it since my very poor experiences years and years ago and I don’t actually know the number anymore. Next hospital visit, I must get it!
Of course, all this makes it all the more important to go for my monthly methotrexate blood test … and therein (of course) lies another tale … for a later post!
Tags: aches, arthritis, Barcelona, crafting, felting, Hunstanton, nuno felting, paper fabric lamination, RA, rhematoid arthritis, rheumatoid arthritis (RA)
It all started on Good Friday (aka the first day of passover). I had to work all day and when I got home I had a slight cough – but hey, I often have a slight cough. I thought no more of it and went of to dinner with my mum and visiting bro and SIL (aka Mr and Mrs Mooseface). A very nice dinner it was too. We got home and I felt cold … then I felt REALLY COLD! Eventually, when huddled under two duvets, wearing a dressing gown and thick bed socks and with a hot water bottle cuddled up to me, I thought ‘Hmm, I wonder if I’ve got a temperature?’ I did. it was 101.2 degrees – pretty high. The next day was a big Passover celebration with a bunch of cousins and I missed that completely! NOT HAPPY! ‘Heck!’ I thought, ‘we’re supposed to be off to Barcelona in just over a week – I hope I’m OK for that.’ It turned into a very nasty bug with a sore throat, cold, stomach problems and aches, similar to flu.
To ‘cut stories long and short’ as a South African coach driver I once met used to say (a lot, which is why it’s stuck in my head for over 30 years!) I wasn’t – and neither was hubby, who trumped my temperature by going up to 102.2 two days before we were due to fly – by which time I had also contracted sinusitis.
We didn’t go!
(Mind you – if we’d had travel ‘fun’ like Mr and Mrs Mooseface did on their recent holiday, maybe we were better off staying at home!)
I’d been looking forward to this trip for years – literally years – since I was last there, in fact. A bit of a disappointment then (says Penguin with true British understatement). I was also off work for the whole week before our ‘holiday’ which caused some problems, as you can imagine. I was determined though that as a) I still felt pretty rotten and b) I was darned well going to have a holiday, I wasn’t going back in my ‘holiday week’ so I didn’t … which caused more problems. At least the boss couldn’t tell me off ’cause I’m self-employed.
Toward the middle of what should have been our Barcelona trip, hubby started to feel better, and my antibiotics for the sinuses began to work, so we decided on a couple of days’ holiday on the north Norfolk coast – ’cause neither of us felt up to driving very far. I found a hotel on TripAdvisor in Old Hunstanton which was really lovely and the weather couldn’t have been better – in fact weather-wise we could have been in Barcelona! The hotel was very quiet, had excellent food and a bar open all day, and was less than ten minutes walk from a rather lovely beach – just right for a pair of old convalescents! It did us both the world of good!
Unfortunately it ended all too soon (although Enormous Cat says it went on far too long*) and we had to come back home. I did manage to get some crafting done at the weekend though, before I went back to work – I nuno felted four scarves, so pretty pleased with myself there! (No photos as yet, I’m afraid!)
All this time the RA had been pretty much dormant, quiescent or however you’d like to describe it, which was generous of it given everything else that was going on!
Then back to work – oh boy was that hard after two weeks away – and we are SO busy, and stupid things kept happening, mostly my own fault – or at least the fault of the fact my work-brain was temporarily disconnected! That situation (both the business and the disconnected work-brain) hasn’t really resolved over the last couple of weeks!
I have got very into my nuno felting though and then I discovered ‘paper fabric lamination’ here at Felting and Fibre Studio. A whole new world of nuno felting potential! Unfortunately I also discovered that the RA’s back … it’s probably not even ‘flarette’ stage right now but it’s niggling away and making me tired and somewhat achy, not helped by the fact that the beautiful weather we had briefly has now gone and it’s dark and gloomy out there again!
I have just about (with many small breaks for coffee and a sit down!) managed to make a couple of small samples with paper fabric lamination and nuno felting (see above) – and I reckon that this could easily be incorporated into scarves and other clothing and would wear just fine – even the metallic bits – see the bee in ‘bee and flower’- so that’s quite exiting. (Well it is for me – but I’m a bit odd like that!)
Felting, however, is NOT kind to RA joints! I’ve been working on ways of minimising the problems, like using a sander (noisy!) and a tumble drier (not enough control) so I’m back to just doing it in small spurts and in small pieces! These two together are only a about 10 inches across and 6 down! When I feel better I’ll try it in some silk chiffon and then maybe make a scarf or two incorporating some fabric paper laminated features.
Tags: accident, arthritis, being a burden, burden, crutches, flare, gratitude, horse, joint pain, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I was chatting in the kitchen at work today with a lass who works in the same building. She had an accident at the weekend and is hobbling around on crutches. As an active, sporty person she’s feeling very frustrated – who wouldn’t be – but I was slightly amused (in a sympathetic way of course) at her frustration with losing her independence. I offered to carry her coffee down the corridor for her and she said no, she’d manage. ‘I hate being a burden’ she said, ‘I’m normally such an independent person and everyone’s being so kind and helpful and I’m having to rely on lifts and things for everything, and of course I’m grateful but I HATE IT!’ I do so know the feeling – although I’m incredibly lucky with my RA that it comes and goes so must of the time I can remain independent, but when I can’t that continuous feeling of pressure (entirely internal, not from the people around me) to show gratitude, and that feeling of being a burden is just horrible! I don’t think I can explain that feeling to anyone who hasn’t experienced it – but I know many of you reading this will have experienced it too!
Then she said, ‘And everyone’s got an opinion! “Oh, you’ll have to stop doing that now this has happened” and “If you’d been wearing stronger body protection …” and “You shouldn’t have gone out on a day like that” and “If only you’d thought to do this first …”‘ In fact it was one of those unavoidable things – an ‘act of god’ if you like – something spooked her horse and she came off it. It happens. She wears body protection, she was in a lesson and it wasn’t that bad a day or the teacher (and she herself) would have cancelled. But yes, everybody has an opinion!
‘Oh, eat a spoonful of honey a day and your arthritis will disappear’ – ‘Oh, if you lost weight you’d have no arthritis problems’ – ‘Oh, my mother took a whisky every night and lived till she was 122 without any arthritis symptoms, maybe you should try that’ … Doesn’t that sound familiar? The being a burden thing and the everyone has an opinion thing are two things that I think bloggers on RA and chronic disease blog out rather frequently, but it turns out it’s not just ‘us’.
But at least horse lady will get a full recovery (or I certainly hope so) and no doubt ‘look back on this and laugh’ whereas we folk with chronic disease are a bit more stuck with it! Nevertheless, in true Pollyanna fashion, I’m still grateful (and without that burdensome feeling!) for the fact that my disease is mild and for all the things I can still do … and now I can add to that the fact that I’m very unlikely to be thrown off a spooked horse anytime soon, since I’m very unlikely to be on one!
Tags: aches, arthritis, doctor, exercise, flare, flare-up, joint pain, methotrexate, MTX, NHS, pain, R.A., RA, rhematoid arthritis, rheumatoid, rheumatoid arthritis (RA), rheumatology, work
I woke up yesterday morning with really bad pain in my hip/lower back, but by lunchtime it had passed off, so I had a lunchtime walk yesterday as usual, and very pleasant it was too, until about half-way round, when I got a very sharp pain in the side of my foot, just behind the little toe. (Same leg as the hip pain.) By the time I got back to work the pain was coming in short, sharp bursts lasting up to about 10 seconds and then was fine in between … but in between wasn’t very long! It was happening at least twice a minute. I took paracetamol and, three hours later, ibuprofen, but to no avail. We had to go shopping that night and I limped around the supermarket and then asked hubby to drive home as I was in too much pain. It wasn’t the worst pain I’d ever experienced but it was BAD. My foot just in that area was bright red and swollen, so that sounds like RA, but the odd coming and going of it doesn’t seem quite right. I THINK it was RA and I’m just a weird patient!
Anyway, of course being Monday last night was m-m-m-methotrexate night. I went to bed still in a LOT of pain, and woke up in the middle of the night thinking, ‘OOOH, my foot hurts’ and then again, some time later in the middle of the night, I think around 3:30, thinking ‘OOOH, my foot DOESN’T HURT!’ And it hasn’t hurt since. I have no idea what’s going on or why, but MAYBE it was lucky that that happened on a Monday and the methotrexate kicked in. I don’t think it’s supposed to work like that though, is it? It’s supposed to be a slow build-up, not a week by week thing. Perhaps it was just a short, sharp flare-ette and just finished then. Perhaps it wasn’t RA at all. They mystery of what is and isn’t RA is certainly … mysterious …
That reminds me of the time a few weeks ago when I was getting sharp pains and bad headaches that felt like they were on the outside of my skull. Not the first time this has happened, you may recall. Oh dear, I thought, I hope this isn’t giant cell arteritis – I think it’s that sort of symptom … and then I realised I was wearing a hair-slide that was being pushed into my head by my transcription headphones! Much relieved that I worked this out by myself and didn’t bother the poor, overworked GP with it!
Anyway, the good news is that the answer seems to be ‘not to flare’ at the moment, but I’m having a day off walks this lunchtime just in case it happens again!
Tags: aches, arthritis, GP, hospital, joint pain, knee, NHS, nurse, nurse practitioner, physical therapy, physio, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.
It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!
And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!
I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!
And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.
If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:
- A blood sucker (aka phlebotomist)
- The lab doing the work on the cholesterol
- The hospital secretary
- The surgery secretary who sent out the letter
- The GP who had to call me back and discuss what we’d discussed three weeks before
‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.
Tags: aches, Eye, joint pain, knee, R.A., rhematoid arthritis, rheumatoid arthritis (RA)
Thanks for all the comments. Well, we made it back today, and successfully collected the fabric. (If you have no idea what I’m talking about then you’ll need to read the previous post!) Run4Joy – not sure about ‘spry’, the knee isn’t perfect … in fact neither knee is as good as it was a couple of days ago, but both are much, much better than yesterday!
Maggie, good point! We made it back and this time we got to the nature reserve – and very lovely (and flat) it was too. You can’t see in the picture above but between us and the church there’s a lovely river (the River Dove), teaming with damselflies and dragonflies. Most of the (very small) reserve is a wild flower meadow, so a jolly nice place to visit in the summer!
Carla, I’m sure you’re right – I had been overdoing it, so we had a very short and leisurely walk around the reserve and then headed back home and put our feet up. Poor Hubby, having done all the driving two days running … not to mention the drive up to the coast on Friday night for a walk around Cromer, Blakeney and Wells (did I mention I might have overdone it lately?), was more in need of a feet up afternoon than I was!
Tags: aches, anti-inflammatories, arcoxia, arthritis, doctor, flare, medicine, methotrexate, MTX, R.A., RA, reducing tablets, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tablets, weather
You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!
I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.
I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.
Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!
Tags: aches, autoimmune arthritis, blog carnival, joint pain, knee, NHS, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, stress, tiredness, WAAD, WAAD blog carnival, work, World Autoimmune Arthritis Day
This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” I hope I’m not cheating, but I’m going to describe two days – one just post diagnosis and one post-“control” where I am now!
4:00 am A day in March 2008
Wake up hurting – everything’s hurting. My neck and shoulders are very stiff, my back aches, my feet are killing me, one arm is numb and the other has pins and needles going from shoulder to finger-tips – but oddly only the little and ring finger.
Worry – a lot. Come on, I was diagnosed as ‘likely’ are in November last year, and definitely in February – so how come it’s still not sorted. OMG, what if it never does get sorted? Am I going to end up a wheelchair? Will I cope? Will hubby cope?
And where the heck is that physio appointment they promised me months ago?
4:00 am A day in March 2014
7:00 am March 2008
Wake up feeling completely un-refreshed and cursing myself for having spent an hour in the middle of the night worrying instead of sleeping. Worry some more as I creak my way gradually out of bed, gently testing bits of me to see how mobile they are. The relief of shaking off the pins and needles and then plunging my hands into warm water is enormous.
7:00 am March 2014
Wake up, blinking the ‘sleep’ out of my eyes. Slight stiffness. Hubby draws the curtains and says, ‘How’s the Penguin?’ ‘Stiff and achy,’ I reply, but then I realise that this is nothing to how it felt a few years ago, really NOTHING, and instantly feel a bit better.
7:30 am March 2008
Take a hydroxychloroquine and a diclofenac and wonder if they’re helping or not. I know I have to wait another couple of months to find out. It’s frustrating!
7:30 am March 2014
Take a hydroxychloroquine and an ‘arcoxia’ cox-2 inhibitor. I had to stop taking the diclofenac eventually after a nasty stomach upset – the arcoxia are supposed to much worse for the stomach, but so far don’t seem to be worrying mine!
8:00 am March 2008
The stiffness is just starting to think about wearing off. My left knee is very swollen and I hobble out to my car using a stick, to head off to work. I’m wondering how I’ll make it through a whole day!
8:00 am March 2014
Stiffness? What stiffness? Did I say I was stiff and achy this morning? Heavens! I’d forgotten. That wore off in about ten minutes.
9:00 am March 2008
Work – chat to colleague – drink strong coffee – work some more. Try to remember to MOVE because otherwise I freeze into place and struggle to get out of my chair when I need to later.
9:00 am March 2014
Work – chat to colleagues – drink decaffeinated coffee (this change has nothing to do with the RA, but I have rosacea and the symptoms of that are drastically decreased by drinking only decaf coffee rather than ‘caffeinated’), work some more. Move when I want to – it’s not a particular issue any more.
12:00 pm March 2008
Strewth I’m stiff – I got a bit too involved in some interesting work and haven’t moved out of my chair for an hour. Now I’m in the embarrassing situation of needing a ‘comfort break’ rather urgently and thinking it’s going to take me five minutes to un-stiffen enough to get there!
Time for the next diclofenac. Oh no! I’ve left them at home! Mad dash home in the car to get one, and then back to work.
12:00 pm March 2014
Lunch time – get up, stretch a bit, possibly say ‘creak’, which makes my ‘Junior Penguin’ colleagues chuckle, but really I’m quite mobile. Grab a bit of lunch and go for a mile walk – I know it should be longer … and faster … but it’s about what I can manage comfortably in the time I can spare and my knees aren’t right, though much better than they were a few years ago.
Happily no lunch-time tablets any-more – as life-style changes go, this one has had a surprising amount of impact ! I’d really hate to have to go back to trying to remember lunch-time tablets again!
3:00 pm March 2008
Really wondering if I can last until five. If I was on my own I’d be out of here – but I’ve got an employee now and I feel I should set a good example so I stay.
3:00 pm March 2014
Wow – I love this job – time for a bit of a coffee break and then back to some really interesting transcription about language usage … followed, for a bit of a change, by some transcription about sheep diseases! Variety – that’s what I love!
5:00 pm March 2008
‘I’m tired and I wanna go home’ but we’re really busy and I’ve promised someone to get some work back to them this week – I’d better stay a bit longer, even though I feel soooooo tired and achy!
5:00 pm March 2014
I’m outa here – life’s too short! My way of working these days is to delegate or subcontract what I can’t fit in between 8am and 5pm Monday to Friday. I’ve got about 15 hobbies (and one hubby… and friends) and I want time to enjoy them all… especially as, let’s be honest, I don’t know how long I’ll be able to carry on with some of my hobbies, especially those involving a lot of walking or using my hands! I don’t feel negative about it though – things are going well at the moment and I’m making the most of my free time!
6:00 pm March 2008
Still at work.
6:00 pm March 2014
Just leaving a friend’s house. I’ve popped round for a post-work chat and coffee. Feeling pretty fine.
7:30 pm March 2008
Just about manage to get some supper on the table. I only arrived home half an hour ago so it’s ‘oven fish and chips’. 7.5g of methotrexate tonight, with another diclofenac, another hydroxychloroquine and a lansoprazole (stomach settling tablet).
7:30 pm March 2014
We’ve eaten already – I like to eat early and have the evening to play in – especially as I’m usually in bed by 9:00 pm these days – I find an early night makes a huge difference to my general well-being.
Tablets were 17.5g of methotrexate (yeah, it’s gone up a lot but I don’t care – it’s working, and there’s still room for it to go up a bit more … although I do worry sometimes about what happens if/when I’m up to 25g and there’s nowhere else to go because my symptoms are too mild to get anti-TNFs etc. on the NHS!), and another hydroxychloroquine and a lansoprazole.
9:00 pm March 2008
Getting ready for bed – head still buzzing with what’s happening at work, worries about health, worries that I’m not finding time to do the things I love and speak to the people I love, worries, worries, worries. Heaven knows when I’ll get to sleep. Read a book for a bit to try to take my mind of it.
9:00 pm March 2014
In bed sipping a cup of decaf coffee that hubby’s just made me. Feeling satisfied that I’ve done a bit of Spanish ‘homework’ and managed quite a chunk of embroidery and a bit of crochet this evening, while watching an interesting documentary on the telly and discussing it with hubby later in some depth. Reading a good book on my iPad and feeling very relaxed.
10:00 pm March 2008
Oh no – I really don’t feel sleepy. I’ll read some more and try to relax. ‘Come on Penguin – light’s out’ says Hubby. ‘Just another five minutes’ I say, knowing he’ll be asleep in four and I can carry on reading!
10:00 pm March 2014
11:00 pm March 2008
Better put the light out. Toss, turn, toss, turn.
11:00 pm March 2014
1:00 am March 2008
At last … zzzzzzzzzzzz…..
1:00 am March 2014
2:00 am March 2014
Wake up – stiff, in pain, pins and needles – wriggle about until I feel vaguely comfortable, lie awake for 20 minutes and eventually drift off to sleep.
2:00 am March 2014
Wake up – roll over – zzzzzzzzzzz…………….
And so another day starts in the life of Pollyanna Penguin …
Tags: arthritis, diagnosis, doctor, fatigue, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, tiredness
This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” My previous post on this is here.
As I said in my previous post, these days RA doesn’t have such a huge impact on my life. In fact I almost feel a fraud posting about it, but there are some little things, and some equally small hints and tips on coping with them, that I can post about.
Other than making sure I take my medication really regularly, I don’t have to do an awful lot to manage my RA but one of the most important things I do is wear orthotic insoles in my shoes. It certainly helps being married to a chiropodist! These insoles have made a massive difference to me over the years. They’re now just a part of life, but if I do have occasion to wear ‘fancy’ shoes or, as I did yesterday, wander downstairs with bare feet without thinking, I soon know about it – and not in a good way! I had painful feet for years before diagnosis whenever I spent a bit of time walking about, and I just assumed it was the pain everyone had when they said ‘Ooh, it’s good to take the weight off your feet!’ It didn’t dawn on me for ages that when I took the weight off my feet they still hurt, and other people’s didn’t!
Another little tip is warm water – warm water is a wonderful thing if your hands are stiff first thing in the morning! I rarely get significant morning stiffness but if I do, plunging my hands into a sink full of lovely warm water really does help. (Hubby will read this and suggest I should do more washing up, I dare say!)
The other major effect RA has on me, and the most difficult one of all to get through to people who don’t understand the disease (including family, doctors, family who are doctors …) is the fatigue! This really is a big problem and the only way I can deal with it is to pace myself and try to keep to a boring routine of early nights and early mornings. (Obviously if late mornings are an option for you, that’s fine – they aren’t for me as I work full time.) People always pull faces and think I’m making excuses when I’m being a party pooper at 9 pm … and maybe they’re right as I’ve never been a fan of parties … but really, an early night and a good sleep makes all the difference to me.
The final thing is flares – even though my arthritis is mild and controlled I still get flares. They’re a fact of life. The hardest thing is to remind myself during a flare that it may seem like a dark tunnel but there IS light at the end of it. It’s ridiculous – every time I have a flare I feel as though THIS IS IT and things will never be right again. After seven years since diagnosis and quite a few flares you’d think I’d be over this but I’ve spoken to other RA sufferers and people who have other diseases that also flare and die down, and many seem to go through the same thing. It’s not sensible but I haven’t yet found a way to avoid it! So if anyone would like to offer me a hint or tip on this, it would be appreciated! :-)